- We're raising awareness of fibromyalgia
- Employment Booklets
We're raising awareness of fibromyalgia
Click here for some ways to get involved with the charity
Employment Booklets
Fibromyalgia can have an impact on employment. Click here to access our publications page where you can access our employm...
Corona Virus: We are still available but physical orders may be delayed as our staff are remote working. Click here to read more information on the Coronavirus and Fibromyalgia. Our helpline continues to be available between 10 and 4 weekdays on 0300 999 3333
Contact Form Issues - We are having some issues with our contact forms. If they do not work please email head.office@fmauk.org
Matthew Dobson: My fundraising for FMA UK and why I am doing it
I was diagnosed at 22 with chronic fatigue syndrome. It had taken 2 years of back and forth testing and different Drs and more testing, before the diagnosis. From the diagnosis I wasn’t offered much. “Rest” and “exercise” was about it. RC Vacancy: Wales
We are currently recruiting a volunteer to cover our Regional Coordinator role in the Wales area.
Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.
General duties of the Regional Coordinator include
- Keep up to date with FMA UK news from the FMA UK Trustees, office, website & social media
- Cascade this news and any other information to groups within the region by e-mail or snail mail.
- Keep in touch with groups in the region by e-mail, telephone, meetings or newsletter.
- Help to resolve local group difficulties, asking the advice of a Trustee if necessary.
- Represent the views of groups and helplines at meetings with the Trustees and report back information gained.
- Try to organise a regional meeting annually if feasible.
- Direct new enquirers to their local group or helpline.
- Answer regional e-mails generated from FMA UK website www.fmauk.org
- Represent the region when invited to specific meetings or exhibitions.
- Provide support for people who wish to set up a new local helpline or support group.
- When invited visit local support groups.
- Uphold the FMA UK confidentiality policy at all times, if in doubt make contact with the RC’s Liaison who will seek clarification from the Trustees if necessary.
- Attend meetings with trustees and other regional coordinators online via MS Teams and in person at annual Trustees/Regional Coordinator meeting
- Provide a monthly report for MS Teams meetings
- Comply with the Regional Coordinators expectations document.
Please submit Application form by email to This email address is being protected from spambots. You need JavaScript enabled to view it. by 12/10/2020
For further information - please email This email address is being protected from spambots. You need JavaScript enabled to view it.
Maryanne Hood: My challenge for FMA UK
“My name is Maryanne Hood and I am 33 years of age, a single mum to three wonderful children. I work part time, and suffer from Fibromyalgia and M.E. I am raising awareness for Fibromyalgia as this is an invisible condition which can impact people in different ways. It can seriously impact the quality of life whilst leaving people in pain each day.
Harvard Article - CBD for chronic pain: The science doesn’t match the marketing
We have a lot of conversations about CBD and cannabis and these have increased since NICE started looking into it. The culture around it is changing as well to make it easier to talk about it in terms that accept that it may have medical benefits and we should at least be looking at this.
But there are a lot of claims and suppliers that are promising the moon when there is a lack of evidence and people are trying to take advantage of the current lack of regulation within CBD oil.
So it is positive to see articles like the one below from Harvard University that try to give a reasoned view of the current status and although it is American in its view there is a lot of information here that is relevant within the UK.
FMA UK supports the calls amongst other pain / health charities that there is a need for more research that establishes not only efficacy but safety and other drug interactions.
To read the article, click here.
FMA UK Statement on NICE draft guidelines
Guidance on chronic pain is to be welcomed but we have concerns with the recent draft guidance and these have been echoed within our community. We have concern about working treatments potentially being withdrawn from patients without replacements. Increased pain, symptom flareup as well as withdrawal symptoms are not what chronic pain patients need.
We understand these guidelines have introduced chronic primary pain as opposed to chronic pain. The lack of clarity of what conditions are considered within these categories and where the line is between the two will leave scope for misjudgements.
Which Mattress?
We regularly get asked the question “What mattress is best for fibromyalgia?”. We are all individual in which mattress type will suit us best, and there is no definitive answer to this question. We have done some research among our social media followers & forum members, and hope that this article may serve as a guide. We had 152 responses to our survey. More Articles...
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Highlights
- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.
The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.
We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement
Important Notice‼️ | At the end of March, our JustGiving Text service which allows you to donate using your phone will be ending. Instead, you can now take advantage of our new Text service with Donr. To make a donation, text 'FIBRO' to 70085 to donate a default £10. This costs £10 plus a std rate msg.
Alternatively, you can opt to give any whole amount up to £20, by texting Fibro + the amount you wish to donate, e.g. FIBRO 5 to donate £5.
Please share to make our followers aware of our new text donation arrangement.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
